Namine
Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.
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Playground time
The other night Jessica wasn’t feeling well, so I took Namine over to the park so she could have some peace and quiet. It threw our entire evening’s schedule off, but Namine didn’t mind.
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Climbing into the car
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Surgery drawing near
We consider the benefits of the Fontan now versus later.
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Echo tomorrow
Nearly every cardiology visit is filled with big and scary words. Tomorrow’s word of the day is echocardiogram. (Am I supposed to put a hyphen or space in there somewhere? As a self-taught medical student – by necessity, you understand – I can never remember.)
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Namine on her trike
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Our day at the zoo
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Qotd
“Namine, do you want cake for dinner?” “No.” “Do you want cookies for dinner?” “No.” “Do you want pizza rolls for dinner?” “Oh, yes yes yes!” That’s my girl.
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Fear is a choice
I don’t need my moon on tonight. I’m not afraid of the dark. Namine’s “moon,” a night-light that hangs from her ceiling, has often provided comfort and a little light for Namine while she goes to sleep. Some nights she still asks for it to be left on, but most nights she doesn’t need it.…
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Day at Gramma’s
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Captain Cheetos herself.
Captain Cheetos herself.
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Feels
Returning from Boston, my parents brought home for Namine a book, entitled Good Night Boston.
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Crazy days
With Jessica’s mom in the hospital, that’s where we’re spending nearly all of our free time.